I feel like sh** on a stick. Got to get the crying under control, it doesn't help, just makes the pain that much worse. Wonder if the kids would notice if we went to bed now at 4:00?
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Chiari & Syringomyelia Information
- Chiari Symptoms
- Syringomyelia Symptoms
- Types of Chiari Malformations
- 17-page slideshow for newly diagnosed patients
- CINE MRI (Spinal Fluid Flow Study)
- News Article: Chiari connected to SIDS
- Chiari Connection International group
- Watch a Posterior Fossa Decompression Surgery
- CSF leak info (including nasal)
- eMedicine Chiari I info, pics included
- Mystery Diagnosis TV episode re: Chiari
- The Chiari Institute
- American Syringomyelia Alliance Project, a 501(c)(3)
Ehlers-Danlos Syndrome
- Cavities & Broken Teeth in EDS Patients
- Remarkable neuromuscular impact in EDS patients
- Life threatening predisposition to vascular malformations w/EDS
- Recurrent collapsed lung in EDS
- EDS patients bleeding out during spine surgery
- Diagnosing children
- EDS presenting as tongue hypermobility
- Spleen rupture
- Vascular EDS-complications kill pregnant mother & baby
- EDS patients in traumas (IMPORTANT)
- Beighton Scoring for Ehlers-Danlos
- Ehlers-Danlos Information, Pictures Included
- EDS Article: "Like Sewing Up Jello"
- EDS & Chiari Study Results
- V-EDS, trauma docs need to know
- V-EDS, surgical challenges
- Genetics of Ehlers-Danlos Syndrome
- Urinary problems in EDS patients
- TIP: How to get out of bed properly
- TIP: Using Joints Wisely with Ehlers-Danlos
- Oral Manifestations in Ehlers-Danlos
- Dislocations & Testing
- Breast calcifications in EDS
- Ehlers-Danlos Today
- Breathing problems in Ehlers-Danlos patients
- Ehlers-Danlos National Foundation, a 501(c)(3)
- Pain Relief Network
CM & SM Studies
- PFD Mortality rate 3%; Complication rate 32%
- CM presenting with bilateral hearing loss
- CM w/Tethered Cord Syndrome
- CM can be diagnosed at 18 weeks gestation
- Syringobulbia & CM w/change of voice
- CM caused by shunting
- CM worsened by lumbar drain post-op
- Unstoppable hiccups as an initial Chiari symptom
- Traumas cause CM to become a problem
- Syrinx resolution post-PFD
- CM & focal motor deficits
- Trauma worsens CM
- CSF complications in PFD
- Neuropathic Pain in CM/SM
- Syrinx Fluid Flow--Post-op indicator
- Oil-base dye & SM, Adhesive Arachnoiditis
- Pseudomeningocele, Arachnoiditis, PFD
- Scoliosis with CM/SM
- Posterior fossa size & volume in kids predicting later symptoms
- Chiari I Malformation Redefined (Study by TCI)
- Certain protein may help nerve pain
- Chiari 0 Herniation + Syringomyelia
- Chiari + Sleep Apnea
- Surgery for post-traumatic syringomyelia
- TCI/Francomono Re: CM + EDS Combo
- Cordectomy surgery for Post-traumatic Syringomyelia
- Painless burn injury/Post-traumatic Syrinogmyelia
- Tailored Surgery using Intraoperative Color Doppler @ TCI
- Treatment of Syringomyelia study
- Long-term outcome of Syringomyelia +Chiari study
- Critical Look at Syringomyelia Shunts study
- Chiari + Tethered Cord Abstract via Italy
- Syringomyelia and Tethered Cord study
- Tethered Cord caused syrinx. Resolved w/surgery. Abstract.
Tethered Cord Syndrome
- Adult onset Tethered Cord
- Intraoperative monitoring
- Detethering Long-Term Study
- SM resolution w/TCS surgery
- TCS & CM combo
- TCS & Bladder/Bowel Issues, Nerves Involved
- Tethered cord w/syringomyelia &/or Chiari
- Adult TCS mimicking lumbar disc disease
- Conus positioning, absence/presence of lipoma, Tx
- Tethered Cords--How They Occur
- Tethered Cord + Syringomyelia (via Christopher/Dana Reeve Foundation)
- TCS caused SM (surgically resolved) abstract
POTS aka Postural Orthostatic Tachycardia Syndrome
Chiari & SM clothing & More; Funds a cure!
Thoracic Outlet Syndrome
- Stats on Thoracic Outlet Syndrome surgical intervention
- Treating Thoracic Outlet Syndrome
- Treatment of Thoracic Outlet in teenagers
- Pediatric TOS: Vascular risks much more common in children
- Hybrid muscle & TOS
- TOS info from Pain Foundation
- Microsurgical management w/o rib resection
- Excellent TOS illustrations
- Anatomical & surgical info
- Diagnosis of TOS
- Quality of Life with TOS
- Message board for TOS
- Booklet on Thoracic Outlet, from Dellon Institutes
- TOS from Mayo Clinic
- Physical Therapy Corner: TOS explanations, pics, etc.
- eMedicine: Thoracic Outlet Obstruction
- VascularWeb: Thoracic Outlet
Helpful Info, Just in Case
- Attractive medical ID's for men, women, children
- "But you don't look sick!" aka The Spoon Theory
- Drive safe! Help for fused patients.
- Emergency Food; includes state contacts
- Info about Social Security (SSDI & SSI)
- Medicare's official website
- United Spinal Association--great info & advocates
- Americans with Disabilities Act info
- Wheelchair-accessible travel agency
CM & SM Blogs
The Chiari Institute
Blogs of Brave Friends
Save your used stamps for a cure!
Collect used stamps and help fund a cure for Chiari and Syringomyelia! This project has generated over $6,000 for the American Syringomyelia Alliance Project [a 501(c)(3)] research fund since its inception in 1999. Clip canceled postage stamps from the envelope, and send me an email. I will email you back on where to send your stamps, and THANK YOU for helping find a cure for these terrible diseases!
Personally tried-and-true!
Thanks for Visiting!
Thinking about you Keesha . Hugs Roz
ReplyDeleteOh my goodness. I'm so sorry you are having so much trouble. I'm Bobby, the husband of a Chiarian , Sharon. Her blog is http://headsaga.blogspot.com/
ReplyDeleteShe had a decompression here in Aurora Colo. by Dr. John Oro' on June 12th. It has been a rough road. She had to be re-hospitalized after discharge. I just found your blog, and hope you don't mind a link on by blogroll. God bless, you, and your family.